In Action! — 1st Parents Who Listen To Happiness (PWLTH) Support Group Meeting

1. Tin Canon - PWLTH representative
2. Joji Santos
3. Roselle Ting
4. Kathy Cunanan
5. Jimberly Lagunda
6. Nelvin Olalia
7. Charisse Olalia
8. Nick Alisangco
9. Hermie Martinez
10. Elsa Martinez
11. Nona Ong
12. Mheann Leodones
13. Christine Bolesa
14. Chop Lazaro
15. Romel Bolesa
16. Rose Bugayong
17. Michael Bugayong

PWLTH was informally launched during LTH’s parent seminar held last October 17, 2010 at Guadalupe Viejo Barangay Hall, Makati City.  It was spearheaded by Mommy Tin Canon, together with Ong, Olivarez and Nuguid families.  The parent support group aims to gather families in order to share information, to make connections and to support each other.

 

It was formally launched during LTH’s Christmas Party held last November 22, 2010 at the same venue.  More families signed up.  Additional families, from Metro Manila and the provinces, joined as the months passed by.

 

The March 6 meeting broke the ice among parents and speech-language pathologists who didn’t know each other with a very unique game — the Human Bingo game.  Home-made bingo cards had various human characteristics written on it, instead of the usual numbers in commercially-bought bingo cards.  Characteristics on the L-shape of the bingo card were chosen by the group. Who is artistic? Who plays Plants and Zombies? Who is vegetarian? Who has a phobia? Who has read the “Twilight” series? etc. One had to find one possessing that characteristic within the group and let him/her sign on the card. The group ended up knowing each other’s names and discovering something new about each person.

 

The “demystifiying” activity helped parents understand how difficult it is to have hearing impairment; language, speech and cognitive problems; listening difficulties; and other heightened sensory issues. 

 

They were told to listen to Teacher Jim read a short paragraph while cotton balls were in their ears.  Teacher Jim read the paragraph with and without the microphone.  They experienced the difficulties of having hearing impairment, with and without appropirate amplification. 

 

Mommy Tin showed pictures of common objects, such as banana and shoe, all labelled in Portuguese.  2-3 parents tried their best in remembering these foreign words, and were generally successful.  Majority were not “brave” enough to raise their hands, learning a new language was difficult indeed! What more if your child has special needs?  Two mothers shared that they felt what their children were undergoing thru. 

 

Listening in challenging situations proved to be really challenging!  Parents wore home-made 3D eyeglasses and listened to a recorded lecture, and tried to take down notes.  While doing so, there were distractions all around — front door being opened and banged several times, lights being turned on and off, feathers tickling them, scented bandanas being swayed all around them, bubbles being blown anywhere and everywhere, toy instruments being played, chairs being disarranged, people talking, people singing,and the like.  All agreed that it was really difficult to listen and take down notes, with all these distractions and with the cotton balls still in their ears!

 

They were also instucted to spell various difficult words using their non-dominant hand.  It was not easy!

 

Mommy Tin and Teacher Joji emphasized that these difficulties are part of the journeys that children with special needs go through everyday. 

 

Two cell groups were formed, focusing on auditory and educational needs. 

 

The auditory group, composed of two families,  was facilitated by Teachers Kathy and Nick.  Issues of the past that were resolved and current issues were discussed. 

 

One hands-on mother discussed how difficult it was to handle the behavior of her daughter (with two senses affected) prior to implantation.  She underwent appropriate habilitation interventions to address various needs.  After cochlear implantation,  she consistently removed her speech processor, just like her hearing aids prior to surgery.  However, because of the help of their audiologist in MAPping and the gift of hearing that comes with it, removal of the speech processor dramatically decreased.  She reacts to environmental sounds, vocalizes, has gained maturity in terms of her behavior and in adjusting to noisy situations.  These, of course, brought much joy to her parents!  Present concerns include high maintenance of the speech processor and the need to talk to another family with a child with cochlear implant and with vision problem.  They were adviced to consult their cochlear implant company to inquire on this matter.

 

The 2nd family struggles with their son’s removal of hearing aids, yaya problems (does she make child wear the hearing aids when the parents are at work? does she follow-up physical therapy activities at home?) the family’s inconsistent follow-up at home of the various goals from the different interventions, and concerns about the process of having the cochlear implantation.  They were 1) encouraged to carry over goals at home consistently, because it is only thru this that we can see change within the child; 2) make a chart wherein the yaya can tick off activities she has done for the child; 3) put a hidden camera within the house to monitor her; 4) change the yaya; 4) or increase her pay further; 5) discuss CI protocols with the CI representatives and how to raise funds for it.

 

The rest of the group joined the ducational cell group facilitated by Mommy Tin, Teacher Joji and Teacher Jim .  Children of these parents ranged from 5 – 14 years old.  The following are the present challenges:

• being bullied in school
• seating arrangement in a big class with 25 students
• teachers who talk too fast, therefore producing incomplete notes by the student
• fear of the future — being in high school /bigger schools
• not being understood despite having expressive skills / can’t fully express in sentences
• changing schools — progressive or traditional?
• reading difficulties
• school demands — projects, exams
• emotional struggles while in homeschool

Suggested solutions were the following:

• find a friend in school (“buddy system”)
• talk to the prinicpal and teacher concerned regarding seating arrangements and other school challenges
• tutorials to address difficulties in school subjects and in reading
• form a support group composed of the child’s sibling/s and circle of friends
• letting the support group in school also understand “demystification”
• undergo guidance counselling to battle emotions associated with the challengesdetermining the eductional needs of our children – small class size? with individualized program? accomodations like those with ADHD, testing time is shortened, breaks are given in between or homeworks are lessened or given other means of presentation for submission; those with hearing impairment, they should get preferential seating either in front or mid-row depending on the child; for those with Autism they should have an assigned buddy to share a toy or a meal with, faciltitated by an adult
• make the curriculum appropriate to ALL kids with special needs

 

PWLTH’s succeeding activities were suggested and discussed.  These include:

1.  Focus Group Discussion activity #2 by April regarding issues discussed during the first meeting
2. demystification of other family members
3. yaya/caregiver training
4. kids’ camp/get-together for socialization purposes
5. the making of “Parents Who Listen, Kids Who Speak” book of parent testimonies of their journeys in therapy
6. fund raising for LTH projects, as a 5th year anniversary to LTH (we will be turning 5 this coming June 15!) 

THANK YOU FOR MAKING THIS 1ST MEETING A SUCCESS!

WE HOPE MORE FAMILIES CAN JOIN IN THE SUCCEEDING MEETINGS!

Med-el 10th Anniversary, Makati, December 2007

LTH Christmas Party, Pasig, November 2007

Cochlear Awareness Network, Makati, September 2007

Cochlear Ltd Troubleshooting Seminar, San Juan, August 2007

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